5.08.2010

First of all - Happy Mother's Day to all the moms out there! It's a tough (but gratifying) life being a Mom and we deserve a day to celebrate all of the hard work we put into our families. I think this is why we can bond with so many other moms (and moms-to-be), even the ones we haven't met, because the act of being unconditionally devoted to our families is something we all have in common. I hope you all have a wonderful weekend and a wonderful Mother's Day.

I have one small favor to ask this Mother's Day. For anyone that has followed Lillian's story and would like to contribute to making her life (and her mothers life) a little bit brighter, a little bit more manageable, and a lot less stressful, there's a fundraising event for the Indiana Chapter of PWSA (www.pwsa-usa.org). It's called SKIP A LUNCH for Prader-Willi Syndrome and it's this Friday, May 14, 2010.

The Indiana Chapter of PWSA is just getting it's feet on the ground and we had our first meeting when Lillian was just 3-4 months old. We were able to meet other families and their children with PWS, listen to speakers about the future of our children, we talked about long term care facilities and the possibility of building a facility specifically for individuals with PWS in Indiana (because they can not live unassisted and the closest facility is in Wisconsin). We met with a speech therapist that had experience with PWS (which is uncommon around here) and we plan to meet with more people who can help us raise our children into adults with full and happy lives at upcoming meetings - but that costs money. Since our chapter is just getting started, we are doing what we can to raise the money to pay for meeting space, speakers, therapists, and lawyers so that we can all get together and do our best to provide for our children the care they need from birth all the way to old age... because sadly we aren't going to be around forever to care for them.

This organization could really impact Lillian's future and has already helped us in her short life. So here I am, shamelessly asking you to donate your lunch money..... Here is the flyer I've copied and pasted from the Indiana Chapter of PWSA.

****Disclaimer**** That is NOT my address and I am NOT collecting this money. It's used for the entire Indiana Chapter which we are a part of. I will not see who donates money or how much is donated.

SKIP A LUNCH FOR PRADER-WILLI SYNDROME

May is PWS awareness month. Prader-Willi syndrome is a genetic disorder affecting approximately 1 of every 12,000-15,000 births. It results from a small deletion on the 15th chromosome. PWS is the most common known genetic cause of life threatening obesity in children. It typically causes low muscle tone, short stature if not treated with growth hormone, behavior problems, developmental delays, and a chronic feeling of hunger. People with PWS NEVER feel full, even after consuming a large meal. Because of the low muscle tone, people with PWS burn fewer calories and can gain a significant amount of weight eating the same amount of calories as their peers. Therefore, they have to be on a low calorie diet. People with PWS CANNOT control the urge to eat. This urge to eat is physiological and overwhelming; it requires constant vigilance. Individuals with PWS must be supervised at all times.

YOU CAN HELP

PWSA of Indiana has declared May 14th, 2010 as skip a lunch day. We are asking you to skip your lunch and donate your lunch money to PWSA of Indiana. Our organization is just getting its feet on the ground and there are many families affected by PWS here in Indiana that need our help.

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About Me

Hi! This place is where I write down random thoughts and keep track of life's moments.
I try to be an open book and will answer any questions you may have about Prader-Willi Syndrome or being a parent to a child with special needs. I will be the first to tell you to enjoy your life, regardless of the cards you've been dealt!